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Research Involvement and Engagement
Scopus
ISSN 2056-7529 · BMC · 920 artikel di indeks
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Artikel Jurnal
Beyond a buzzword: the need for shared language, education, and enhanced reporting of disability inclusive co-design research
Abstract Background Co-design is an increasingly prominent method for achieving disability-inclusive research. Co-design draws attention to the value of involving people with lived experience of disability in shaping research questions, methods, and outcomes, making it an ideal vehicle for…
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Artikel Jurnal
Giving credit where credit’s due - recognition of patient partners in health research
Abstract Patient partnership in health research has gained prominence over the last decade. Patient partners and the impact of their perspectives on research activities and outcomes are increasingly valued. However, despite the recognized importance of patient contributions, issues persist…
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Artikel Jurnal
Co-designing accessible trial information: lessons from designing an inclusive patient information leaflet in the RaCeR2 study
Abstract Background Informed consent is fundamental to ethical research, yet participant information leaflets (PILs) are often technical and difficult to understand. Although the importance of accessible study materials is widely recognised, practical guidance on how to develop them remains…
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The moment of youth: learning from youth-led research on sexual and reproductive health and rights (SRHR) in Malawian and Zambian settings
Abstract Background Research about young people in lower- and middle-income countries is seldom done by young people themselves. Engaging youth in designing and conducting research that concerns their well-being can improve their skills and make the findings more relevant to young people’s needs…
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Artikel Jurnal
Notes about me, without me: Research about me, without me
Abstract Background In mental health services, documentation is dominated by providers who write clinical notes without the input of the individuals accessing the services. Although these notes are essential, they often exclude the voices and perspectives of those accessing services. We suggest…
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Artikel Jurnal
Patient and Public Involvement and Engagement within a UK blood cancer cohort: a case study
Abstract This paper presents a case study of Patient and Public Involvement (PPI), in which people shared their ‘lived experience’ as ‘experts’ who manage their blood cancer on a daily basis, within their own environment and social circumstances. The case study is set within an ongoing cohort study…
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Artikel Jurnal
Infusing co-design with ADAPT-ITT: adapting interventions with populations experiencing health disparities
Abstract Health disparities refer to preventable differences in the burden of disease, injury, and opportunities to achieve optimal health experienced by marginalized populations. Addressing these disparities requires more than traditional top-down approaches to interventions. One promising…
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Artikel Jurnal
Evaluation of the Bangkok Health Research and Ethics Interest Group: reflecting on the experiences of group members, researchers and facilitators participating in an urban community advisory board in Thailand
Abstract Background The Mahidol Oxford Tropical Medicine Research Unit (MORU), headquartered in Bangkok, conducts research on tropical medicine and global health. MORU works closely with a network of community advisory boards (CABs), with members drawn from communities served by its research sites…
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Artikel Jurnal
Evaluation and lessons learned regarding Public Involvement: a panel advising on an Alzheimer’s disease and related dementia cohort study
Abstract Background Public involvement (PI) in research is increasingly requested, yet systematic evaluation is limited. This study evaluates whether a panel advising an Alzheimer’s Disease and Related Dementia’s (ADRD) Cohort Study fulfills PI quality criteria and leads to perceived Cohort Study…
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Defining success together: a collaborative approach for client and provider-engaged outcomes indicator development in Ontario
Abstract Background While there is growing inclusion of people who use drugs in research and policy forums, they are typically excluded when program outcome indicators are determined. We discuss the methods, results, and lessons learned from two projects that engaged people who use drugs, who are…
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Artikel Jurnal
Who CaREs - We do: Development of a community and researcher engagement program in translational medicine
Abstract Background There are increasing calls from research funders for the inclusion of community members at all stages of the research cycle. However, meaningful community engagement in translational research may be challenging to achieve, establish, and maintain. Main text The Community and…
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Artikel Jurnal
Strategies for engaging individuals with traumatic brain injury and cognitive impairment in virtual research settings
Abstract Background Engaging individuals with lived experience in the research process is essential for producing patient-centered research with real-world impact. However, there is a gap in knowledge about how to effectively engage individuals with traumatic brain injury (TBI) and cognitive…
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Artikel Jurnal
Partnership by design: co-designing an institutional framework for engagement at a leading Canadian pediatric hospital
Abstract Background Healthcare institutions are increasingly recognizing the importance of implementing integrated processes for carrying out patient engagement in health systems improvement and research, however, concrete tools and guidance for doing so are needed. While frameworks for engagement…
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Experiences of current practice, priorities and strategies for enabling meaningful consumer and community involvement collaborations in health and medical research in Queensland, Australia
Abstract Background Consumer and community involvement (CCI) in health and medical research is essential for ensuring meaningful and transferrable research. However, CCI practices vary across study types, research fields, and settings, limiting capacity to determine changes needed to enhance…
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Artikel Jurnal
Putting FUN into involvement: feedback user needs in the design of a mobile phone app for people with long-term conditions
Abstract Involving users in the design of health mobile phone apps is important to their success. This article reports on the involvement activities of people with long-term health conditions in a project called P-STEP. This is a unique project combining health and environmental data within a…
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Artikel Jurnal
Community perspectives on partnering with early-stage investigators in pilot research
Abstract Background This study explores the experiences of community partners who collaborated with early-stage academic investigators on a yearlong NIH-funded health disparities research initiative in Cleveland, Ohio. Methods Anonymous surveys (n = 13), a focus group (n = 5), and one individual…
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Artikel Jurnal
Establishing a set of acceptable demographic questions for use in health research through public consultation
Abstract Background The importance of inclusivity in health care and health research is increasingly recognised in the UK. However, there are currently no UK standards for collecting self-reported demographic data from research participants. To address this gap, we undertook a public involvement…
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Artikel Jurnal
Co-developing a complex transfer intervention with parents: a case study of involvement and parental experience
Abstract Background Research into patient and public involvement (PPI) in healthcare has gained increasing recognition over recent decades. The insights and experiences of parents of adolescents with chronic illness are valuable and can inform adolescent healthcare services, including adolescents’…
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Artikel Jurnal
Embedding public and patient involvement in childhood stuttering research: lessons learned from engaging children and families in Saudi Arabia
Abstract Background Public and Patient Involvement (PPI) is increasingly recognised as essential for ensuring health research is relevant, inclusive, and responsive to local contexts. However, in many regions of the Middle East, including Saudi Arabia, PPI remains underdeveloped. This commentary…
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Artikel Jurnal
Co-developing preoperative therapy for Dupuytren’s fasciectomy: lived experience and clinical expertise
Abstract Background Harnessing Lived Experience Expertise (LEE) and Clinical Expertise (CE) is essential for patient-centred research. Yet transparent reporting and critical reflection on their impact remain limited. This study details an iterative approach to integrating LEE and CE in the…